Effectively Navigating the Healthcare System

Medical practice has drastically changed over the past 25 years. It used to be that you went to the doctor only if you became suddenly or acutely ill. The doctor would prescribe a treatment, and then the corner druggist would fill the prescription and instruct you how to take the medication.

Today, medical practice has evolved and is part of the larger healthcare delivery industry. At some point, you either have interacted or will interact with a spectrum of healthcare delivery systems, an array of services, and a variety of healthcare professionals. No wonder some people find the system to be such a confusing maze.

Patients are now referred to as clients, members, or consumers. These terms encourage individuals to be proactive in their care, and your role as a healthcare consumer has never been more important. You are more than a patient. You are your own best advocate, the person who can best inform your medical providers about your symptoms, problems, and details about other services you might be receiving.

Because of advances in technology, changing information, novel tests, and new medications, caring for people with chronic illnesses is increasingly complex. As people age in this country, they are likely to develop at least one chronic illness and, with advancing age, additional chronic illnesses. HIV infection, heart disease, diabetes, kidney disease, lung disease, liver disease, and Alzheimer's disease are among the leading chronic conditions that require long-term management. It is not uncommon for older people with HIV to have an additional health condition. It is nearly impossible for one healthcare professional to treat all of the needs of an individual with a chronic condition. The team approach has become an accepted and necessary model of care.

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In addition to the doctor, nurse, and pharmacist, other team members include nutritionists, social workers, case managers, medical specialists, and more, including home care nurses, physical therapists, massage therapists, and acupuncturists. Each healthcare professional on your team must focus on a particular part of your care. There has to be someone who understands how all parts of your care fit together in keeping you whole. That person is usually your primary care provider (PCP). But the most important member of your healthcare team is you, the consumer, client, member and patient.

Understanding the Role of Healthcare Professionals

Understanding the role of each team member and how to navigate the healthcare system while advocating for your needs will cut down on frustration, wasted time and energy, and delays in care. Family members, spouses, partners, friends, as well as case managers or home attendants can help you maneuver through your universe of healthcare so that you receive the best care possible. The importance of considering all of your healthcare providers as a team is vital to keeping your care connected. The more each provider on your team knows about where else you go for care and the kinds of services you receive, the better it is for you when it comes to prioritizing aspects of your health and care.

Your primary care provider may become your main focal point of care, depending on the state of your health. PCPs are responsible for providing health maintenance care and coordinating care. The PCP may be a Doctor (MD or DO), Nurse Practitioner (NP), or Physician's Assistant (PA). PCPs are busier than ever these days because of the responsibility of caring for large numbers of patients and keeping up with the volumes of new medical information released every day.

Most PCPs spend the majority of their days going back and forth from one exam room to the other seeing patients. If you call your PCP's office, more than likely you'll be told, "Sorry, she's with a patient right now." PCPs create time to catch up on "behind the scenes" work. That behind the scenes work is just as important as seeing patients face-to-face; however, there is usually no time built into the day to complete those duties.

PCPs make the time to catch up during lunch, early in the morning, after hours, or on weekends. This work includes staying current with medical information, properly interpreting test results, researching information about puzzling cases, responding to phone calls and correspondence, completing paperwork, and coordinating care and interacting with all members of each individual patient's healthcare team.

This is why most PCPs ask patients to call for prescriptions or paperwork that you need several days in advance of needing them. The clinic or office staff is usually trained to handle the majority of calls and questions from patients during the day. When you phone your PCP's office, state the reason for your call. Chances are that someone in the office can help you. That will save you the frustration of waiting for a return call from the PCP.

All of the healthcare professionals on your team should have each other's contact information. There will be times when they need to speak with each other concerning your care. The better you understand the roles of your team members, the more familiar you will become with which ones need to communicate with each other at any given time.

Pharmacists handle prescriptions and double check that the consumer is not allergic to the medication and isn't taking other drugs that may interact with the newly-prescribed medication. They offer advice and information about over-the-counter preparations and answer questions about your health. Some pharmacists provide home delivery services and extensive education about medications. Some pharmacists specialize in certain treatments like HIV therapy.

Nutritionists are knowledgeable about the specific dietary needs and requirements of diseases such as HIV. They offer guidance around meal planning, especially about weight concerns and medications.

Social workers can help you navigate the system and assist with everyday needs like housing, clothing, and food. Some social workers have special training and provide psychotherapy (talk therapy) for people who have depression or other emotional problems.

Psychologists (Ph.D. or Psy.D.) have doctorate degrees and specialize in counseling. They provide psychotherapy and, in some states, can write prescriptions for medications that help treat emotional and mental health problems.

Psychiatrists are medical doctors (MDs), have expertise in prescribing medications for mental health issues, and may also provide psychotherapy.

Many people today are enrolled in healthcare management organizations (HMOs) or managed care organizations (MCOs). These plans are designed to help streamline care and improve the efficiency and cost effectiveness of medical care. Some managed care companies have nurses available to answer questions, help coordinate appointments, and monitor your progress in care. HMOs credential doctors and Nurse Practitioners to work in their plan/network. The doctors and NPs who sign on with the plans are considered to be "in network," while others are "out of network" and, therefore, usually more expensive to see.

Helpful Tips

The following tips may help you navigate and negotiate your way through healthcare systems, your appointments, and your relationships with healthcare professionals:

Prepare for your visit. Write down your questions ahead of time. List your symptoms and concerns so you don't forget them. Your healthcare provider has a limited amount of time to spend with you, so make every minute count.

Know the names and doses of your medications. Write the names and doses of your medications on a piece of paper and tuck it into your wallet or purse. Or take all of your medication bottles to your appointments. If another provider prescribes medications for you, be sure to inform the other healthcare professionals on your team. Inform your PCP if you use over-the-counter medications or natural remedies such as herbs and supplements.

Read all medication labels and instructions. Ask your PCP or pharmacist about potential side effects or possible drug interactions of the medications you are taking. Let them know if you have side effects. Some side effects are serious, while others are not serious and are manageable.

Know how to contact your PCP if you have an emergency when the office is closed. Most PCPs have systems in place to handle off hours emergency calls. Know whom to contact if your PCP is away and the hospital affiliation of your PCP in case you need to go for emergency care.

Know when you need refills on your medications. Contact your PCP's office about a week ahead of time to allow time for the prescriptions to be handled.

Leave clear messages when you call your PCP's office. Chances are that if you leave a message for your PCP without stating the reason, the response will be delayed. PCPs must prioritize calls and respond accordingly. Tell the receptionist why you are calling. The receptionist is an important part of your healthcare team.

Update your address and phone number. Your PCP's office should have your current contact information in case there is a need to contact you about test results, scheduling changes, and so on.

Know the reason you were referred to a medical consultant or for a special test. That will help you stay focused on the reason for the appointment and provide accurate information to the consultant.

Carry your PCP's contact information with you at all times. Whenever you see a specialist, go to the emergency department, or have a test performed, insist that the results be sent to your PCP. Ask whether there are any special forms you need to sign to make sure the information can be sent. Be sure to have your PCP's contact information with you when you travel.

Provide your PCP with names, addresses, and dates of specialists you have seen and tests that have been performed. Your PCP may refer you but may not necessarily know the date of your test or where you were sent. Keep notes about who you saw, why you saw them, and what was recommended so that you can report that information back to your PCP so that he or she can follow up effectively.

Remind medical consultants to either call your PCP or send a report. Take a note or referral from your PCP to the consultant. That will help make it clear as to exactly why you are there. The note also provides the consultant with your PCP's name, address, and phone number.

Know how to use your health insurance plan. Understand your health plan. Your PCP may not know the details of all of the plans of all of his or her patients. For example, some plans require written referrals from your PCP to a specialist. Preapproval for equipment or special medications may be required. Each plan has its own formulary of medications that it covers.

Keep a notebook with dates and results of your test results. Reviewing your results in private may allow you to learn more about what's happening with your health.

Call to cancel appointments you cannot keep. Try not to miss appointments. It may be difficult to get another one in the near future depending on the availability of services in your community. Also, missed appointments send the message that you aren't interested or invested in your health. That may not be true, but that is the impression that is made.

Continue to educate yourself about HIV infection and other conditions that you may have. Members of your healthcare team will be able to direct you to information sources that are accurate and credible. Ask questions and for explanations until you understand the answers. Inquire about options, expected results, and outcomes. If you don't ask questions, the members of your team may assume you know everything about what is going on.

Understand that waiting is an unfortunate norm in the world of healthcare. Most healthcare professionals have very little control over their schedules. Because of the large numbers of people who need care, schedules are usually tightly packed. This can lead to backups and crowded waiting rooms. Computer problems, staff illnesses, staff turnover, misplaced medical records, or very complicated patients on any given day may result in even further delays and increased waiting time. Many of these problems are beyond the control of the healthcare professional and are just as frustrating for the provider as they are for you. A crowded waiting room creates anxiety among the staff. The tension can lead to unproductive and dissatisfying visits, medical errors, and staff resignations. This is ultimately detrimental to all involved. Look for someone to whom you can voice your complaints.

Complain in an effective manner. Emotional outbursts in waiting areas make staff and other patients nervous and create even further delays. It is more effective to lodge a formal complaint. Most administrators take complaints seriously and use them to figure out systems so that problems can be fixed over time.

What Do All Those Letters Mean, Anyway?

Healthcare professionals and researchers often have many letters following their names. These titles indicate, to some degree, their training, experience, and qualifications. The following list isn't exhaustive, but explains what some of the abbreviations following professionals' names refer to.

AAHIVS -- American Academy of HIV Medicine (AAHIVM) HIV Specialist

An MD, DO, PA, or NP who has completed 30 hours of continuing medical education (CME) credit in two years, has seen 20 or more patients with HIV within two years, and has passed a qualifications exam on HIV care. Two thousand providers are registered by the AAHIVM as HIV specialists. When choosing a healthcare provider, be aware that many providers may have equivalent experience in HIV care, but aren't certified by the AAHIVM. Visit www.aahivm.org for a referral.

ACRN -- HIV/AIDS Certified Registered Nurse

A registered nurse who has completed 70 hours of CME credits, has at least two years of experience in HIV/AIDS care, and has passed a certification exam for HIV/AIDS care.

DO -- Doctor of Osteopathic Medicine

A Doctor of Osteopathy has the same rights and privileges as a Medical Doctor (MD). They can prescribe medications and practice medicine in all fifty states. The training that a DO receives is comparable and, in some cases, identical to that of an MD but may have more of a "whole person/whole body" approach. DOs tend to consider the psychosocial as well as the physical well-being of a person, as well as how individual symptoms of certain parts of the body may affect others. DOs also receive additional training on the musculoskeletal system and Osteopathic Manipulative Treatment.

FAAN -- Fellow of the American Academy of Nursing

A distinction given to nurses in recognition of their accomplishments in nursing. Many fellows have high levels of training (82% hold a doctorate in nursing), and most have leadership positions in academic, research, government, or community settings.

GI -- Gastroenterologist

An MD or DO who specializes in the care of the stomach, intestines and liver.

ID -- Infectious Disease Specialist

An MD or DO who specializes in treating a range of infectious diseases, including HIV.

LPN -- Licensed Practical Nurse

A nurse who has completed certification to administer certain treatments. Works under the supervision of a Registered Nurse (RN).

MSW -- Masters in Social Work

Social work is a profession committed to helping individuals, families, and communities at multiple levels. Some social workers continue their training to become licensed or certified psychotherapists.

MD -- Medical Doctor

A physician who holds a medical degree and is licensed to practice medicine and surgery as well as prescribe medications and other treatments.

NP -- Nurse Practitioner

A registered nurse with advanced clinical and academic experience, including a master's degree. A Nurse Practitioner's abilities vary depending upon each state's regulations. In many states, a Nurse Practitioner can prescribe medications.

ANP -- Nurse Practitioner (adult care)

FNP -- Nurse Practitioner (family care)

GNP -- Nurse Practitioner (geriatric care)

PNP -- Nurse Practitioner (pediatric care)

PA -- Physician's Assistant

Clinicians who provide healthcare to individuals under the supervision of physicians (MDs or DOs). Their training is not as long as that of MDs and DOs, but their responsibilities are quite similar. They routinely take medical histories, examine and treat, order and interpret laboratory tests and X-rays, make diagnoses, and prescribe medications. They also treat minor injuries by suturing, splinting, and casting. PAs also record progress notes, instruct and counsel patients, and order or carry out therapy. In rural and inner city areas, PAs may be the principal care providers when a physician is present only one or two days a week. They are able to practice in 47 states, all of which require PAs to pass a certification exam and are then designated as a PA-C (Certified Physician Assistant).

Ph.D. -- Doctor of Philosophy

A doctorate (advanced) degree in any subject matter (not necessarily philosophy or medicine). Nurses, pharmacists, nutritionists, and social workers, among others, may continue their education to receive this doctorate degree.

Pharm.D. -- Doctor of Pharmacy

In addition to two years of pre-pharmacy study, a Pharm.D. has completed at least four years of graduate studies to earn a doctorate degree in pharmacy.

Psy.D. -- Doctor of Clinical Psychology

Psychologist with specialization in clinical psychology, including deep understanding of severe psychological disorders and psychotherapy.

RD -- Registered Dietician

Many nutritionists are also registered dietitians. RDs are trained in the science of nutrition as well as dietetics, a discipline focused on relationships between dietary patterns and health, both in normal nutrition and in disease states.

RN -- Registered Nurse

A nurse who has completed a Bachelor of Nursing program.

R.Ph. -- Registered Pharmacist

A Registered Pharmacist must be licensed in the state in which they practice and hold at least a bachelors degree in pharmacy.

Continuity of Care

Juggling medical appointments, taking medications on time, eating right, and exercising in order to keep your health together is a full-time job. Another part of keeping your health together is making sure that there is continuity in your care -- no gaps, no missing information. Your medical record, lab and test results, and consultation reports must be available for your PCP or other healthcare professional on the day of your appointment.

A problem in many settings is the lack of systems for the exchange of information. Some patients believe that consultation reports are automatically sent to their PCPs. While that is the way it should work, it doesn't happen on a consistent basis. A lot of time is wasted during the day tracking down missing information. Reports may arrive after you have already left the office.

Your PCP may be caring for thousands of people and so cannot possibly remember every detail about each individual. When you see a specialist, know the reason for the appointment and any recommendations that the specialist suggests. That way, you can report back to your PCP and help to keep your care in motion. The more healthcare professionals involved in the care of one individual, the more confusing things can become. Inaccurate information and confusion can diminish the effectiveness of your care.

Choosing a PCP

You can begin by making sure that the clinician you're seeing is experienced in the treatment of HIV/AIDS. Some PCPs provide HIV primary care in general medical settings, like private practices, health centers, or hospital-based clinics. PCPs who care for people with HIV/AIDS may have special credentials as an HIV Specialist. Special centers, like a Designated AIDS Center (DAC), may have both Infectious Disease (ID) specialists and PCPs.

ID specialists have extensive training in treating many kinds of infectious diseases, including HIV/AIDS. ID specialists may choose to provide only HIV care and not primary care. If you choose an ID specialist, you will likely also need to find a PCP. Take time to choose the type of medical setting that best suits you. Word of mouth, managed care plan listings, and trial and error are a few of the ways patients find a setting and a provider best suited for them.

As in any relationship, the course of care goes much more smoothly when a patient and the healthcare professional like each other -- call it the "click thing." You can almost feel the click when it happens; it is the connection that blossoms in an instant or over time. "Clicking" requires mutual trust, honesty, and realistic expectations. The energy of healing then flows both ways.

Quality of Care

Quality of care includes having a positive relationship with your PCP and other team members. While the quality of a relationship is difficult to measure, there are aspects of care that are measurable. Every single appointment should have a purpose. Most settings have quality check ups, and your record may be reviewed to make sure you are receiving quality care from your PCP. Your PCP may actually receive a report card from time to time. Work with your PCP and make sure you are up to date with all aspects of your healthcare maintenance. (Use the Personal Health Record on center pull-out chart.)

The more you learn about your health, your healthcare, and the healthcare system, the more empowered you will be to advocate for yourself and the more likely you will receive the quality of care necessary to keep you as healthy and happy as possible for as long as possible.

L. Jeannine Bookhardt-Murray, M.D., A.A.H.I.V.S. is Medical Director at Harlem United Community AIDS Center, a community-based organization in New York City committed to serving the biopsychosocial needs of the PWHA community. She is a consultant to the Office of the Medical Director at the New York State Department of Health AIDS Institute, where she focuses on treatment guidelines for the care of PWHAs.

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